Hope everyone had a great, pain-free weekend! I am feeling much better after Saturday’s perfect storm–coming down off of dex at the end of my four week Velcade cycle. I’m ready for a busy week, including a visit from my dear friends, Karl and Lorraine Vollstedt, from Hastings, Minnesota. Karl helped establish a very successful myeloma support group near the Twin Cities; the Stillwater group recently celebrated their 100th consecutive monthly meeting.
I chronicled the celebration in a post not long ago:
Support Group Magic!
Speaking of dear friends, embattled myeloma survivor, John Knighten, emailed me last week with a medical update. If you recall, I introduced you to John in one of our first Patient Snapshot features last year.
John has had a rough time living with an especially aggressive form of high risk multiple myeloma. I met him at a support group in Spokane, Washington. His matter of fact attitude in the face of relapse and pending tandem auto/allo transplants inspired me. John has been kind enough to email me periodically so we can follow his progress. Here’s the latest:
Hi Pat,
It’s been another couple weeks since my last update. We’re on day 15 post transplant. Overall things are going great. We seemed to have engraftment around day 10-11. Counts have been coming up rapidly the last few days just about doubling every day. As a matter of fact, the transplant team has given me a couple days off; I no longer need daily labs and monitoring. Friday will be my next checkup with the team and just twice a week for the next stretch. This time around I’ve had quite a bit of mucositis compared to the first. I was on a study with amafostine my first transplant and had almost no mucositis. Pretty tough for a few days but you get through it–although it has been a struggle trying to get enough food down my throat to make the team nutritionist happy. The last week Shawna had a sinus infection and we sent her home for a visit with our girls. My brother Eric who’s an RN, jumped in and took over looking out for me.
My brother Paul also came over for a visit. We put word out to the Allo transplant team about finally getting the donor picked from the two matches, they came back during Paul’s visit that he would be my donor. Needless to say he has been bragging to the rest of the family that he has won the competition. We’ve been joking about what he’ll demand for his services my motorcycle or boat! We had a nice visit with Eric and Paul the rest of the weekend, although Eddie the clinic shuttle driver says he’s going to tell on us to Shawna. Paul was told to be ready to come back for the donor workup in early April and plan on staying at least two weeks.
Shawna got back feeling great and brought our 10 year old for an extended stay. Fred Hutchinson has a school dedicated to family and patients going through treatment that has really intrigued my daughter Kasey since my first transplant. So we agreed to have her stay and go to the Hutch School for a few weeks. She’s been having a tough time with Dad being away for treatment and was just all smiles since she’s arrived! The rest of the daughters will be here Thursday night for a long weekend visit. It will be nice to have all the kids here.
So it looks like we have made it through my second autologous transplant with no inpatient stay! The team says doing that once was a rarity and to pull it off twice really impressed them. I don’t see getting through an allogeneic without some impatient time, but I plan on giving it one heck of a try. Hope things are going well for you, take care- John
I love John’s competitive spirit! John breezes through transplants like most of us fight-off a cold. But dealing with painful sores in one’s mouth and throat is no picnic–trust me, I know!
I wanted to sneak-in a photo of a another Patient Snapshot star, 20+ year survivor Jim Bond:
Jim’s condition continues to improve following his allo transplant, using cells from an unrelated donor last year. He’s pictured above with his lovely wife and caregiver, Kathleen, in the couple’s kitchen in Ohio.
You look great, Jim!
Feel good and keep smiling! Pat
March 11th, 2013 at 5:54 pm
One down and one to go! I am sure John will sail right through his allo like most patients do. I think the difference between the allo and the drugs we use for myeloma is that the Docs that do allos are honest and upfront about the potential side effects while the Docs that prescribe never ending cycles of “novel” agents either do not want to tell the patients what the side effects are and in some cases do not even know what the long term side effects are. I was going to email you the Wall Street Journal article you just posted. As soon as I saw the comment that Revlimid does not cause PN I thought of you. I knew you would comment on that!
All positive energy being sent John and Jims way as they move forward!
March 11th, 2013 at 10:24 pm
Yep. Couldn’t let the “Revlimid doesn’t cause PN” thing slide! You know, Mark, I believe John is undergoing tandem therapy because he relapsed so quickly and his myeloma is high risk. Maybe someday your suggestion that more docs perform early allos might catch-on. After all, they are so much safer than they used to be. I know a dozen or more patients before their allos and all have survived. What does that say for the 15-20% that don’t make it stat? That must be inflated, isn’t it?
March 12th, 2013 at 8:57 am
Pat & friends:
Our Spokane MM Support Group met last evening. We had a terrific speaker from Onyx Pharma, Dr. Heidi Simmons. She has to be the highest qualified drug rep ever, with a PhD in cancer biology. In addition to calling on cancer centers here in the Pacific Northwest, she works with Fred Hutch and OHSU on clinical trials. Dr. Heidi shared her comments about MM in general, then focused on carfilzomib. She spent considerable time discussing clinical trials and the latest research.
Cynthia, one of our members, is in touch with John Knighten. Cynthia was good enough to give us an update. John, our thoughts and prayers are with you, and we extend best wishes. We are confident that your family is pulling for you, and so is your Spokane MM family.
Dean, another member, started pom 4 days ago. Dean promised to keep us updated on his first cycle with pom and side affects. No nausea so far, however he broke out in a rash hours after his first dose. He’s also had considerable bone pain in the long bones.
Best wishes to all.
Howard
March 12th, 2013 at 10:34 am
So glad your group up and running, Howard. You and Teresa deserve a lot of credit for stepping-up and helping to run things! Hope to return sometime soon–what an awesomely beautiful area! Everyone is so friendly…
March 12th, 2013 at 3:07 pm
I do think the non-relapse mortality of allos are not as high as many believe because of how they are counted. As you could tell from the some of the recent comments here and in your MB column, a lot of patients are not aware that the main cause of death for a myeloma patient is infection due to a lowered immune system. That is the same reason most allo patients die (non relapsese mortality)as well. The difference is an allo patients chance of dying from an infection is highest during and for about a year after the translant. If you are like me and are off all drugs, my chance of infection is lower than a myeloma patient on long term Revlimid, Velcade, Krypolis, DEX, etc therapy. It also fits right in with a comment that I loved in the MB comments section (you have to write on DEX more often!!)
“But if any of you “I’m going to live forever” fa-la-la-la gang think people don’t die everyday from multiple myeloma, you aren’t dealing with reality! Four of our support group members died in a ten month period last year. We have 30 or so members, but that includes caregivers. So figure 16 patients–and 4 died. Yes, most were older and several had serious co-morbidities. Still, you do the math… To boldly say, “That won’t happen to me!” I feel is disrespectful.”
Did you take notice of some of the comments from some of the non-auto patients, especially one of Berensons patients. They really think they are immune from the side effects of the novel agents because they never did high dose therapy. News flash for those patients – the non-relapse mortality rate in a year for any group of myeloma patients is not zero. The non-relapse mortality of TT2 was in the area of 8% according to the Docs at UAMs. If an allo is 10% for newly diagnosed patients done in first CR than it is 2% higher than a control group. This might surprise some of the readers. I saw a study on Revlimid with high dose vs low dose DEX that said this:
“However, at the second interim analysis at 1 year, overall survival was 96% (95% CI 94–99) in the low-dose dexamethasone group compared with 87% (82–92) in the high-dose group (p=0·0002). As a result, the trial was stopped and patients on high-dose therapy were crossed over to low-dose therapy.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3042271/
So REV and high dose DEX can have a higher non-relapse mortality than some allo studies show. REV and low or high dose DEX do not have the long term remissions allos have and I highly doubt there is a study that shows patients on REV/DEX having quality of life on par with population norms like some long term (5-10 year) allo studies do.
It is risk vs reward. I think most myeloma Docs and patients overestimate the risks of the allo and do not understand all of the potential benefits. The reason for overestimating the risks of the allo is that it seems they are comparing allo recipients to the general population. Also do not forget the PFS (progression free survival) for allo recipients are usually DRUG FREE PFS. Therapy breaks do the body good!!!
March 12th, 2013 at 7:54 pm
Mark, I think you need to let me post content like this as a column. As I may have mentioned previously, best I can tell from my primitive diagnostics only 1 out of 4 or 5 readers actually reads the comments. This type of thing is too important for so many readers to miss!